A doctor, a lawyer and an activist talk about the future of assisted death in Canada

A doctor, a lawyer and an activist talk about the future of assisted death in Canada

Because of last year’s landmark Supreme Court decision, the federal government has until June to figure out how—not whether—to formally legalize physician-assisted death throughout the country. Gravely ill Canadians are already taking advantage of their newly enshrined right to die, but there are still a multitude of questions about how far Canada should go in making the option accessible to patients. To untangle some of those issues, we spoke with three people who have been active in the national debate. Meet the panel:

Maureen Taylor, a physician assistant, former CBC journalist, and widow of Donald Low, the prominent microbiologist and right-to-die activist
James Downar, a critical care and palliative care physician at the University Health Network
Jan Goddard, an attorney who specializes in elder law, and who recently represented a client seeking an assisted death

Q: In February 2015, with its decision on the Carter case, the Supreme Court struck down the sections of Canada’s criminal code that forbade physician-assisted death. James, as a palliative care physician, you’re on the front lines. What’s the latest?

Downar: The court suspended the ruling for 12 months, and the new government asked for and received a four-month extension. So, the criminal code provisions will be struck down as of June 6. In the time between now and then, individuals who are considered competent adults with grievous and irremediable medical conditions causing enduring suffering can apply to the Superior Court in their province to receive an assisted death. That’s where we are right now.

Q: So, what exactly does an individual have to do at the moment if they want a physician-assisted death?

Goddard: We lawyers have a saying: sometimes you have a right, but you don’t have a remedy. Individuals certainly have been invited to apply to the court for authorization to have a physician-assisted death, but it’s very difficult to craft that remedy.

At the end of January, the Ontario Superior Court issued a practice advisory to lawyers explaining what would have to be included in an application for authorization for physician-assisted death, and many people who are familiar with these issues are finding the requirements very onerous.

First of all, there is this requirement that you have an affidavit from a psychiatrist, attesting not only to your mental capacity and the fact that you haven’t been subjected to coercion or undue influence, but also to the state of your health. This is a problem, because psychiatrists have told me that opining on the issue of a person’s medical condition is really outside the scope of their clinical practice, and opining in general about someone’s capacity to make decisions is really difficult, because they’re not seeing a person 24 hours a day. They don’t really have any opportunity to determine whether the person is undergoing coercion or influence.

My understanding is that finding a psychiatrist who is willing to opine on one of these situations has been extremely difficult. In addition, the court said you have to give notice to family members, and to anyone else who might be affected by the court order. No one really knows what that means. Why a family member should have any standing to take a position against an autonomous individual is something that I’m having a really difficult time understanding.

Downar: It’s a bit funny, that requirement to notify other people who may be affected. On the one hand, you’re supposed to verify that this person is not being subjected to coercion, but then you’re going to go tell a bunch of people that their loved one wants to die. The only result of that, presumably, is that other people will have opportunities to influence the applicant.

Q: Maureen, what’s happening inside hospitals and doctors’ offices right now? How are medical professionals preparing for the coming changes?

Taylor: At my hospital, we formed a task force a couple months ago, which consists of nurses, bioethicists and physicians. We haven’t gone into the medications. Health Canada is going to have to get involved in what medications are going to be used. But we’re going to be ready on June 6th. We have willing physicians here, and we’re going to be offering this to our patients who qualify under the Carter criteria. I’m happy about that. I don’t know if that’s true in other hospitals.

Downar: I think getting a hold of medications shouldn’t be a problem for any hospital. They are available. Anyone providing physician-assisted death outside of a hospital will potentially have a big problem, though, because a lot of these are anaesthetic agents, very high dose. You can’t just walk up to a Shoppers.

Q: So the level of preparation is different from institution to institution? Everyone is doing it on their own?

Taylor: I think that’s fair to say. But we have to remember that most patients say they want to die at home. That certainly was my husband’s preference, after he was diagnosed with his terminal brain tumour. And so I wonder whether those who provide end-of-life care in patients’ homes are ready for this. That’s a big unknown.

Q: How does a physician-assisted death actually work, from a patient’s perspective?

Downar: There are two accepted methods. In one, the physician would provide the patient with a prescription. The patient would take that prescription to a pharmacy, obtain the medication and then follow the instructions. There are things you’re supposed to do prior to taking the medication orally. And then you take the medication. Most people die within a couple of hours.

In other cases, a patient would be getting an intravenous line put in and having a series of medications administered by the physician to render them unconscious and put them into a very deep coma. Then they’d have medications administered to stop their breathing.

Q: Post-Carter-decision, the debate over assisted death is essentially over—but was there a specific moment in any of your lives that won you over to the “pro” side?

Taylor: I was a reporter back when Sue Rodriguez’s case was making its way through the Supreme Court, and I grew up Catholic, so for me, 20 years ago, it was a tug of war over this. But once I got into healthcare, I changed my mind. That was even before my late husband had his diagnosis. Once Don knew he was facing a death that could be quite prolonged, I became, on that day, not only a supporter but an activist.

Downar: I definitely came out of medical school opposed to it; I can’t really point to one specific case that changed my mind on this issue. Certainly there was an accumulation of cases where I saw patients who were suffering. There were types of suffering that nobody would ever expect healthcare to be able to treat.

Goddard: Can I return to the premise of the question? You said that the debate is over. I don’t think that’s true. We’re still dealing with whether or how to allow patients to give prior consent to medically assisted death. Also, parliament is talking about eventually making physician-assisted death accessible to mature minors, and there’s a raging debate now about whether assisted death should be extended to people who have psychiatric illnesses. I think we’re all on the same page when we’re talking about someone who is nearing the end of their life, but, as far as these other types of patients are concerned, I don’t think the debate is over at all.

Q: The legalization process was initiated by a court decision. Would the it have been less chaotic if it had come about through the normal legislative process?

Taylor: I think if you look at who was in power federally for the last 10 years, there was no way it could have gone any differently. I mean, Stephen Harper was never going to change the law on his own without a court challenge, and he fought it all the way to the Supreme Court. Even when the court struck down the law and gave him one year to change it, he did nothing for six months. Now it seems like everything is a scramble.

Downar: I totally agree with that. The law is actually only a small part of it. There’s a tremendous amount of policy and practice that you need to get right before you can actually implement a comprehensive program. In a lot of other jurisdictions where physician-assisted death has been legalized, it’s part of a comprehensive suite of changes. When it happens by court fiat, the court can’t do any of those things. Giving people 12 months to do what in most countries took many years exposes the limitations in our system. But the simple fact is, if parliamentarians didn’t want the courts to do their jobs for them, then maybe they should have done their jobs.

Q: Now that we’ve talked a little bit about the legal situation, let’s talk about the illegal situation. This week, Toronto Life published a memoir by John Hofsess—a man who secretly and illegally assisted in eight deaths before taking his own life. What are your opinions on that sort of practice? Has it been a good thing, or is it just too problematic?

Goddard: When I read the article, I felt very sad that people had to resort to illegal means. That’s not a criticism of Mr. Hofsess. It felt to me like it would have been so much better if he and his patients didn’t have to take on all that risk and fear.

Taylor: Other people may read the article and be somewhat horrified by the lengths people had to go through prior to now, but everything Hofsess describes was very real to me and to my husband. You wouldn’t even be talking to me today if I had found a way to help Don have an assisted death. I would have done it and I wouldn’t have told anybody.

At one point, I was going to fly to Mexico City and try to get my hands on barbiturates and smuggle them back across the border, but Don felt that was too risky. He thought the idea of the helium bag, like Mr. Hofsess used, was good. So I went out to a party store, and I tried to rent tanks of helium. But then we started to think about how using my credit card would create a record that I’d done this. It didn’t matter in the end, anyway, because there was a shortage of helium at the time and nobody could rent me the tanks.

I also thought, can I really do this? Can I really put a bag over his head and turn the tank on myself and then get rid of all the evidence? It makes me sad to read that article and think that maybe if I’d found Mr. Hofsess he could have helped me and Don.

Downar: I think it’s always hard to condone somebody taking the lives of others, whatever the motivation. That’s a tough one to call. I won’t judge him, but at the same time it’s not the kind of thing I would encourage.

Q: Well, why exactly don’t we want to encourage rogue assisted death practitioners?

Downar: Well, why have doctors? Why not just go down to the barber? He’s probably pretty good and he has sharp stuff, and I’m sure he knows how to take out your appendix. When you’re word-of-mouth and hush-hush, you have absolutely no ability to assess what you’re doing. Driving this stuff underground only encourages unsafe practices.

Taylor: Even though I appear quite liberal, I also want a very strict oversight regimen, both so we can gather best practices and ensure that everyone is following the law.

Q: What safeguards would all of you like to see built into the law?

Goddard: The thing I’m really struggling with is the proposal to allow patients to give prior consent to physician-assisted death. It’s not like I will refuse to assist a client doing that, but I think this has come out of left field. It’s a very complicated thing to act upon someone’s prior consent, or to make a decision for another person. I think that needs a lot more exploration. I would hope that lawmakers are not going to reach too far.

Taylor: I understand Jan’s concern, but I can tell you: Canadians want to know that, should they get something like dementia, they will be able to say in advance that they want their physician to carry out a physician-assisted death. I agree, it has to be carefully thought out. But I don’t think it should be dismissed out of hand.

Q: All of you have known or loved people who were gravely ill and considering a physician-assisted death. Assuming it were legal and accessible, is that an option that any of you would consider for yourselves?

Downar: One hundred percent, yeah.

Taylor: Yeah.

Goddard: I think so, but I’m undecided. I think it’s quite possible if the time and circumstances were right that I would want it, but I don’t know.

Taylor: We’re all healthy people at the moment, but having watched this, not only with my husband but with patients I care for every day, I can see circumstances where I would definitely want it. I want it to be an option.

Goddard: I think having the option is what matters very much to me. I want autonomous persons to be able to make this choice.

Downar: I don’t know how I’m going to die, but I want to be the one to decide.

More about assisted death in Canada